Caregivers

Parent-Caregivers: Learning to Let Go

College senior Roy Avery defines the difference between a parent and a caregiver this way:“A caregiver is someone who’s there to help you meet your needs.”A parent has a vested interest in your well-being and future. They love you.”Avery, 23, has Duchenne muscular dystrophy (DMD) and can’t lift or position his arms and legs. He relies on a power wheelchair and noninvasive ventilation to help him maintain a B+ average in computer science at Central Washington University in Ellensburg.

Despite the Challenge, People Love Their Live-Ins

It’s not easy to live with another person. “Stuff” comes up, like privacy (“stay out of my stuff”), cleanliness (“pick up your stuff”), respect (“get that stuff outta my face”) and trust (“where’s my stuff?”).Yet many people with physically disabling conditions find that living with a personal care attendant solves more “stuff” than it creates — critical stuff like needing reliable help getting in and out of bed, dressing, cooking, or going to the bathroom.

Where Are all the PCAs?

Wanted: Entry-level Taco Bell “crew worker.” Candidate must be able to perform one or more repetitious tasks in a highly standardized manner and operate automatic machinery. Pay: “competitive” wage with the possibility of raises. Immediate access to basic benefits package. Generous 401K match. Opportunities for training and career advancement.

Is Your PCA Driving You Crazy?

Personal care attendants, personal assistants, attendant caregivers: Whatever you want to call them, we all know how important they are to our independence. Depending on somebody isn’t easy. Here are some ways to make the road smoother.For the relationship to be successful, both the personal care attendant (PCA) and the consumer need to understand their roles and what’s expected of them. When there’s miscommunication, trouble often follows.

Parents Beat Back Burnout

All parents make sacrifices in caring for their children, and it’s widely acknowledged that parenting is a full-time job.But parents of children with muscular dystrophy or other neuromuscular diseases know that their job is fulltime and then some. And although this job carries great joy, it also carries a higher-than-average risk of anxiety, depression and exhaustion — commonly called burnout.

504 Plans: What Parents Should Know

Some students with muscle diseases have IEPs (Individualized Education Plans) and some have 504 plans. What’s the difference? Should parents be concerned if the school says their child doesn’t qualify for an IEP, and creates a 504 plan instead — or vice versa?Not necessarily. As the accompanying chart and diagram shows, there’s a lot of overlap between the two plans. The key is for parents to be aware of the pros and cons of each, and keep a close eye on how well the plan is meeting their child’s special needs at school.

Caregiver Exercises

It just takes one little wrong move, like leaning over to tie a loved one’s shoelace, for something to pop in the lower back and put you out of commission. For a caregiver, this kind of injury can be disastrous.“Loads of people have had to give up caregiving due to injury,” says Brenda Shaeffer, [formerly] a physical therapist at the MDA/ALS Center at Johns Hopkins University in Baltimore. “Then they have to find someone else to provide care, or in some cases find a nursing home.”

New Apprenticeship Program for Personal Care Attendants

A new training opportunity, the Direct Support Professional Registered Apprenticeship Program, will assist direct support professionals (such as hired caregivers and aides) in advancing in this essential field, say the program’s creators, the National Alliance for Direct Support Professionals (NADSP) and the American Network of Community Options and Resources (ANCOR).

Hit the Road in an Accessible RV

Barbara Graztke loves to vacation and enjoys traveling six to eight months out of every year. But she finds hotels uncomfortable and doesn’t like to fly. She visits family and friends across the country, but is unable to stay in their homes.The 65-year-old road warrior has post-polio syndrome and uses a power wheelchair. Barbara’s solution to making travel accessible is a 40-foot-long mobile home.

How To Get Personal Care Assistance in Emergency Shelters

Wildfires, windstorms and floods have been in the news regularly this year. What if such a disaster suddenly hit your neighborhood? Would you be prepared? Planning ahead for emergency situations is especially important for people who have disabilities that affect mobility and self-care. You are in the best position to plan for your own safety and well-being since you know your functional abilities and needs best. But where do you begin?